Wednesday, March 17, 2010

I got this email from DebRA today. If you have a moment to email or call your Senators or Representative, please do so. It could get $15 million for EB research.

Dear Debra Friend/Family:

Debra urges you to act now! A Member of Congress has asked us to pass on this very important message to you. We only have three days to act and cannot delay. On behalf of all people living with EB please call, email, or fax your local Senators and Representatives asking them to sign on to the EB appropriations requesting $15 million in funding for EB Research.

You can also email or fax the following message to your Senators and Representatives:On behalf of all people living with Epidermolysis Bullosa (EB), every military burn casualty, and the thousands of veterans suffering from diabetic ulcers, we respectfully request that you provide funding of $15 million for EB research within the Congressionally Directed Medical Research Programs (CDMRP) in the fiscal year (FY) 2011 Department of Defense (DoD) Appropriations Act.

A $15 million appropriation to fund EB research within the CDMRP in the FY 2011 DoD Appropriations Act would move us closer to finding a cure for this heartbreakingly painful and often life-threatening condition. It would give hope to the military and civilian families struggling to find effective treatments for their EB-afflicted children; help provide relief to the millions of Americans suffering from diabetes-induced ulcers; and contribute to advanced care for U.S. combat veterans recovering from thermal or chemical burns. Thank you for your consideration of this request.

Please forward this message to your friends, neighbors and family. Your support can make a huge difference!

Thank you for your support,Dystrophic Epidermolysis Bullosa Research Association of America

I've been following your blog since Jonah was born and also following Tripp and Leah and it breaks my heart to hear your daily challenges and the pain these poor babies are in, just doesn't seem fair. Thank you for providing the letter for us to copy. I just e-mailed my Senators and Rep. I wish there was more I could do but I'm happy to help with this.